Newly diagnosed, many questions

shasta34

My mom just got her biopsy results in, and it is endometrial cancer.  We are going to talk to a gyn/onc tomorrow to find out more and plan out treatment.  Now, ever since the suspicion came up a couple weeks ago, I have been reasearching and reading about it, which led me here to this wonderful site.  I know from reading story after story of all these brave women, that there is definately hope!!  But my mom is convinced that we will walk in the doctor office tomorrow and she will be told she only has a few months left.  Can anyone share a story and give her some hope!  Also, we are comletely new to this, can anyone think of any questions that we should be asking the doctors tomorrow?  My moms concern is that they found a mass in her uterus, she automatically thinks this is a death sentence, I know she is scared, as am I, but we know nothig other than she has a uterine mass and a positive biopsy right now.  Please, anyone, can you share a story and give her some hope!!  Thank you all 

Kaleena

Thinking of you.

Dear Shasta:

 

Please give your mom a comforting hug from me.  It is so scary hearing those words.   Howevever, so many things can come of this.    I was diagnosed with Stage 3a, Grade 2 endometrial adenocarcinoma from a "routine" hysterectomy.   Totally unsuspected and my doc was surprised.  Anyway, I went through treatment, etc.. That was back in 2005.

In 2010, I was told I had a recurrence from a biopsy they took on a mass which confirmed endometrial cancer.  I had surgery but the mass ended up being negative.  They did find one lymph node that had microscopic cells.   I did not do any treatment - just a wait and see approach.

I am telling this so you can tell your mom that she can do this.   I just hope you don't have to wait for over 4 hours for her first oncologist visit like I did!    She may have to go through many tests.  The most important thing is to ask ask ask as much questions as you can.   Also, it is ok to get a second opinion too.

Hope all goes smoothly for her and you tomorrow.

Kathy

P.S.  Please be aware of what you research on the internet.   A lot of the diagnosis etc are way out of date and irrelevant. (Besides Scary!)    Other posters have recommended sites that you can look on.   Sorry, I forgot what they are at this time.   

shasta34

Kaleena said:

Thinking of you.

Dear Shasta:

 

Please give your mom a comforting hug from me.  It is so scary hearing those words.   Howevever, so many things can come of this.    I was diagnosed with Stage 3a, Grade 2 endometrial adenocarcinoma from a "routine" hysterectomy.   Totally unsuspected and my doc was surprised.  Anyway, I went through treatment, etc.. That was back in 2005.

In 2010, I was told I had a recurrence from a biopsy they took on a mass which confirmed endometrial cancer.  I had surgery but the mass ended up being negative.  They did find one lymph node that had microscopic cells.   I did not do any treatment - just a wait and see approach.

I am telling this so you can tell your mom that she can do this.   I just hope you don't have to wait for over 4 hours for her first oncologist visit like I did!    She may have to go through many tests.  The most important thing is to ask ask ask as much questions as you can.   Also, it is ok to get a second opinion too.

Hope all goes smoothly for her and you tomorrow.

Kathy

P.S.  Please be aware of what you research on the internet.   A lot of the diagnosis etc are way out of date and irrelevant. (Besides Scary!)    Other posters have recommended sites that you can look on.   Sorry, I forgot what they are at this time.   

Your story is so

Your story is so encouraging!!  And thanks for the advice on outdated internet stuff, I looked at a few pages and didn't learn near as much as I have from being on here!!  The only dealing we have had so far with cancer, was my grandfather (moms dad) and it wasn't a good outcome.  He had very advanced stomach cancer, he was left with pretty much no options and he passed away after a long, agonizing battle.  So when we received my moms diagnosis, naturally the worst fear set in.  But I have learned that this is different, more treatable/curable.  I have even read several times that this is the "good" cancer to have, as if there is such a thing!  And I know I have found a place of knowledge, comfort and friends here   I will update after we talk to the docs and find out more about what we are dealing with.  Thank you and all the ladies on here, you are all in my thoughts and prayers!!!!

Ro10

Shasta

I was diagnosed with UPSC stage 3-C.  UPSC is a rare and aggressive type of cancer.  I was told the cancer was not curable, but treatable - like a chronic disease.  Pretty scary to hear those words.  But that was 5 years ago that I first heard that "cancer" word.  I have had two recurrences and am working on a third recurrence.  I had an 18 month break from chemo, then a 7 month break, and now I am 17 months since my last chemo.  My CA - 125 is over 700 ( normal is 35, so you can see that the cancer is still present.   I have never been NED ( no evidence of disease ).  I still try to live each day to the fullest.  My husband and I have done some wonderful traveling since my diagnosis.  

I was diagnosed at the age of 60.  I never thought I would reach the age of 65, but I just celebrated my 65th birthday.   Actually I try to celebrate each day.  Keeping a positive attitude is important.  

If you stay away from the Internet, it has scary information there.  This site has helpful ladies and write about what is currently happening eith their treatments.  You can ask any questions and express any fears or concerns here.  Someone has probably experirnced the same thing.

sorry your Mom has to be here.  Good luck with the onocologist.  in peace and caring.

lillefty

Stay hopeful and take it one step at a time

Hi Shasta - So sorry you need to be here but glad you found this board. I have learned so much from the wonderful, strong, brave women here. 

Like you, I sought out this board when my mom was diagnosed with uterine cancer this April. So I don't claim to understand what it is like to be in shoes of the women on this board but I think I understand what you are going through. I hope that my family's story will be helpful to you in this terrifying, stressful, and unnerving time. 

My mom is 70 years old and has MS - so not in the greatest of health when her diagnosis came. She had a radical hysterectomy in May - followed by 6 rounds of chemo which she finished last week. Her diagnosis was stage 4B grade 4 with clear cell features (a very aggressive subtype often classified with UPSC as type II uterine cancer because it is so aggressive and so rare). The prognosis the doctor gave her when she was first diagnosed was not good - he told her she had maybe a couple years at most. This was of course devastating to hear at the time. But I decided that the doctor didn't know my mom and that even if the outdated statistics on the internet told us she only had a 10% chance of making 5 years there was no reason she couldn't be that one out of 10 who made it. My mom told me that she wanted to fight for every day and that she intended to stay around and was willing to do whatever she needed to in order to make that happen - and she is a warrior so I believed her when she said it. I did a lot of research (read several books as well as online research) about things she could do to support her health during her treatment and how I could help her in that fight. We created a new eating plan for her, saw a naturopath who specializes in oncology to discuss diet and supplements, and included visualization and meditation in her daily routine. 

When my mom went in for her fourth chemo treatment, during her pre-chemo exam, the doctor told her that he thought that her CA-125 (tumor marker) would be in the normal range when her test results came back that day and had a huge smile on his face. And it was. We all cried tears of joy. We couldn't imagine we would hear that news in August when she was diagnosed in April. She has continued to have normal CA-125 readings throughout her last 3 chemo tretments and her lymph nodes are all normal now . We can't declare her to have no evidence of disease until she has her first post treatment scan in 3 weeks (which we will be very nervous about when the time comes) but we are very hopeful that will be the case. The doctor is now talking about her follow up monitoring for years to come. 

My family's experience taught me a few things: 

- No person has an expiration date. Doctors can quote statistics to you but your mom is an individual and the doctor can't know how she is going to do. The women on this board are also a testiment to that. 

- No matter how overwhelming things seem, you can get through it if you take it one step at a time. Ask for help if and when you need it. Rely on your support system of friends and family. 

- Make sure you take care of yourself - based on your posts I feel you are a vital part of your mom's support system but you can't help her if you don't take care of yourself both physically and mentally. 

- This message board and the women who are members are an unbelievable resource. Although I haven't posted that much, I come often and have read a lot. It has helped more than I can express. 

I hope you find this helpful. Please feel free to send me a private message if you like - I am happy to help in anyway I can. Sending you lots of positive healing energy. 

Lisa 

 

 

ConnieSW

lillefty said:

Stay hopeful and take it one step at a time

Hi Shasta - So sorry you need to be here but glad you found this board. I have learned so much from the wonderful, strong, brave women here. 

Like you, I sought out this board when my mom was diagnosed with uterine cancer this April. So I don't claim to understand what it is like to be in shoes of the women on this board but I think I understand what you are going through. I hope that my family's story will be helpful to you in this terrifying, stressful, and unnerving time. 

My mom is 70 years old and has MS - so not in the greatest of health when her diagnosis came. She had a radical hysterectomy in May - followed by 6 rounds of chemo which she finished last week. Her diagnosis was stage 4B grade 4 with clear cell features (a very aggressive subtype often classified with UPSC as type II uterine cancer because it is so aggressive and so rare). The prognosis the doctor gave her when she was first diagnosed was not good - he told her she had maybe a couple years at most. This was of course devastating to hear at the time. But I decided that the doctor didn't know my mom and that even if the outdated statistics on the internet told us she only had a 10% chance of making 5 years there was no reason she couldn't be that one out of 10 who made it. My mom told me that she wanted to fight for every day and that she intended to stay around and was willing to do whatever she needed to in order to make that happen - and she is a warrior so I believed her when she said it. I did a lot of research (read several books as well as online research) about things she could do to support her health during her treatment and how I could help her in that fight. We created a new eating plan for her, saw a naturopath who specializes in oncology to discuss diet and supplements, and included visualization and meditation in her daily routine. 

When my mom went in for her fourth chemo treatment, during her pre-chemo exam, the doctor told her that he thought that her CA-125 (tumor marker) would be in the normal range when her test results came back that day and had a huge smile on his face. And it was. We all cried tears of joy. We couldn't imagine we would hear that news in August when she was diagnosed in April. She has continued to have normal CA-125 readings throughout her last 3 chemo tretments and her lymph nodes are all normal now . We can't declare her to have no evidence of disease until she has her first post treatment scan in 3 weeks (which we will be very nervous about when the time comes) but we are very hopeful that will be the case. The doctor is now talking about her follow up monitoring for years to come. 

My family's experience taught me a few things: 

- No person has an expiration date. Doctors can quote statistics to you but your mom is an individual and the doctor can't know how she is going to do. The women on this board are also a testiment to that. 

- No matter how overwhelming things seem, you can get through it if you take it one step at a time. Ask for help if and when you need it. Rely on your support system of friends and family. 

- Make sure you take care of yourself - based on your posts I feel you are a vital part of your mom's support system but you can't help her if you don't take care of yourself both physically and mentally. 

- This message board and the women who are members are an unbelievable resource. Although I haven't posted that much, I come often and have read a lot. It has helped more than I can express. 

I hope you find this helpful. Please feel free to send me a private message if you like - I am happy to help in anyway I can. Sending you lots of positive healing energy. 

Lisa 

 

 

Lisa

There are some posts that I wish we could gather in one spot and label " for newcomers".  Yours is one.  It sets just the right tone.  My best to you and your mom.

 

Would that be a Westie in the picture?  We've had  them for over 40 years.

lillefty

ConnieSW said:

Lisa

There are some posts that I wish we could gather in one spot and label " for newcomers".  Yours is one.  It sets just the right tone.  My best to you and your mom.

 

Would that be a Westie in the picture?  We've had  them for over 40 years.

Thanks Connie

I remember how lost and overwhelmed I felt when my mom was first diagnosed and am willing to do anything I can to help anyone who is going through that really hard time. 

No Westies in my house - a yorkie poodle mix (the black one) and a yorkie shih tzu mix (grey one) - both adopted from the Humane Society. I love all terriers though and Westies are adorable so I can understand why you have had them for so long. 

Best - 

Lisa 

Double Whammy

lillefty said:

Thanks Connie

I remember how lost and overwhelmed I felt when my mom was first diagnosed and am willing to do anything I can to help anyone who is going through that really hard time. 

No Westies in my house - a yorkie poodle mix (the black one) and a yorkie shih tzu mix (grey one) - both adopted from the Humane Society. I love all terriers though and Westies are adorable so I can understand why you have had them for so long. 

Best - 

Lisa 

Type I vs Type II

Shasta - MOST endometrial cancers are Type I (adenocarinomas).  I think 75% of them are. Most is not an understatement.  This is what I had and I am in great shape 3 1/2 years following surgery as my only treatment (I was Stage 1a, Grade 1).  This is the "good" endometrial cancer. I refer to it as the garden variety type.  It is typically slow growing and as long as it is confined to the uterus only, it has a very high cure rate.  When I reach the 5 years mark, I will be released from follow-up (I think). 

The other Type II endometrial cancers (UPSC, MMMT, etc) are more aggressive and require more aggressive treatments.  Even though it has a higher chance of recurrence and is usually treated with both chemotherapy and radiation no matter what stage it is, you will read many stories here from women with this type of endometrial cancer.  I personally have a friend who was Stage 2 UPSC and has been cancer free (i.e., no recurrence) for 6 years now. 

There are outliers in all bell-shaped curves and it is impossible to know where your mom will fall, regardless of what type of endometrial cancer she has.  Unfortunately, we all have to take one day at a time and the waiting for test results, scans, etc. can be awful.  I think we all do reach a place of acceptance eventually, but it takes time.  Your mom is frightened and I'm sure you are, too.  There is not getting around that for most people.  Platitudes from well meaning friends don't fix it either.

Your visit with the gyn/oncologist should give you more information.  Prepare a list of questions to ask and write down the answers.  In the early stages of our journeys I don't even know how our little minds remember anything.  My best wishes to you and your mom.  Please follow up with us.

Suzanne

Tresia23

Agree with Suzanne

Hi Shasta, I cannot add to what Suzanne has said but her advice is so very true and really sensible. Your mom will be scared and so will you but at some point it all begins to shape how you approach each day. So use all the good information that you find here on this board. I would maybe suggest that you and your mom try to spend time each day not thinking about 'cancer' as well, and do something for yourself that will take your mind away from this difficult time. Thinking of you and your mom

BarbaraDe

Ro10 said:

Shasta

I was diagnosed with UPSC stage 3-C.  UPSC is a rare and aggressive type of cancer.  I was told the cancer was not curable, but treatable - like a chronic disease.  Pretty scary to hear those words.  But that was 5 years ago that I first heard that "cancer" word.  I have had two recurrences and am working on a third recurrence.  I had an 18 month break from chemo, then a 7 month break, and now I am 17 months since my last chemo.  My CA - 125 is over 700 ( normal is 35, so you can see that the cancer is still present.   I have never been NED ( no evidence of disease ).  I still try to live each day to the fullest.  My husband and I have done some wonderful traveling since my diagnosis.  

I was diagnosed at the age of 60.  I never thought I would reach the age of 65, but I just celebrated my 65th birthday.   Actually I try to celebrate each day.  Keeping a positive attitude is important.  

If you stay away from the Internet, it has scary information there.  This site has helpful ladies and write about what is currently happening eith their treatments.  You can ask any questions and express any fears or concerns here.  Someone has probably experirnced the same thing.

sorry your Mom has to be here.  Good luck with the onocologist.  in peace and caring.

Thank you for those positive

Thank you for those positive words.  I was diagnosed with uterine cancer January 23rd, 2012.  I had a radical hysterectomy and both external and internal radiation.  In a recent scan, unrelated to a cancer check, they found 16 nodules!  My gyno/oncologist told me that my uterine cancer has metastasized to my lungs.  I go for a biopsy on the 23rd of October and have many questions!

 

As I am typing this and reread it, I just realize that the "23rd" is not a very good date for me...

 

Anyway, I put up a post "looking for answers"...maybe you could help.  Have to go for now.  My Mom was recently diagnosed with Alzheimer's and I am her primary care giver.  I will check back later.

 

Thanks, in advanced, for any help you can give!

Barbara

lillefty

Double Whammy said:

Type I vs Type II

Shasta - MOST endometrial cancers are Type I (adenocarinomas).  I think 75% of them are. Most is not an understatement.  This is what I had and I am in great shape 3 1/2 years following surgery as my only treatment (I was Stage 1a, Grade 1).  This is the "good" endometrial cancer. I refer to it as the garden variety type.  It is typically slow growing and as long as it is confined to the uterus only, it has a very high cure rate.  When I reach the 5 years mark, I will be released from follow-up (I think). 

The other Type II endometrial cancers (UPSC, MMMT, etc) are more aggressive and require more aggressive treatments.  Even though it has a higher chance of recurrence and is usually treated with both chemotherapy and radiation no matter what stage it is, you will read many stories here from women with this type of endometrial cancer.  I personally have a friend who was Stage 2 UPSC and has been cancer free (i.e., no recurrence) for 6 years now. 

There are outliers in all bell-shaped curves and it is impossible to know where your mom will fall, regardless of what type of endometrial cancer she has.  Unfortunately, we all have to take one day at a time and the waiting for test results, scans, etc. can be awful.  I think we all do reach a place of acceptance eventually, but it takes time.  Your mom is frightened and I'm sure you are, too.  There is not getting around that for most people.  Platitudes from well meaning friends don't fix it either.

Your visit with the gyn/oncologist should give you more information.  Prepare a list of questions to ask and write down the answers.  In the early stages of our journeys I don't even know how our little minds remember anything.  My best wishes to you and your mom.  Please follow up with us.

Suzanne

Great point Suzanne

I really should have started with the fact that there is no reason to believe that her mom has advanced cancer or one of the rare aggressive sub-types of cancer. I know how hard it is but to take it one step at a time and not get ahead of oneself.  

My story was meant to give her hope that even if her mom does have an advanced stage cancer and an aggressive sub-type it does not mean a death sentence and the last thing I wanted to do was possibly make anyone more worried. I will always remember to include that first part when I post in the future if someone doesn't know the type or stage of their cancer yet. 

May you stay NED for many many years to come. 

Lisa 

shasta34

Tresia23 said:

Agree with Suzanne

Hi Shasta, I cannot add to what Suzanne has said but her advice is so very true and really sensible. Your mom will be scared and so will you but at some point it all begins to shape how you approach each day. So use all the good information that you find here on this board. I would maybe suggest that you and your mom try to spend time each day not thinking about 'cancer' as well, and do something for yourself that will take your mind away from this difficult time. Thinking of you and your mom

Thank you all so much for

Thank you all so much for such encouraging words!!  This last week has been crazy.  My mom and I met with the gyn/onc who explained to us that she has cervical cancer, the biopsy was supposed to be for endometrial cancer but the doctor performing it couldn't get to the endo tissue so was only able to get cervial tissue, which showed squamous cell cancer.  The mass in her uterus is actually a mass coming from the cervix into the uterus...I'm still trying to wrap my head around the new informtion.  They have staged her at 1b2, and she is going for a PET scan next week, and will start 25 rounds of radiation and 5 rounds of chemo over the next 5 weeks, but the doctor said she doesn't see a need for surgery right now.  So now I guess we wait for the PET scan!  She had a CT scan done aleady, and the gyn/onc said she didn't see any signs of cancer anywhere else, but the PET scan will check her lymph nodes as well as give them a more accurate picture of the mass.  She said the PET scan was pretty routine for her patients, but I am so worried about the lymph nodes, I am praying they are clear!  The doctor didn't say too much about what would happen if there is lymph node involvement, and that scares me.  Can anyone fill me in on that???

Hopeful Girl1

shasta34 said:

Thank you all so much for

Thank you all so much for such encouraging words!!  This last week has been crazy.  My mom and I met with the gyn/onc who explained to us that she has cervical cancer, the biopsy was supposed to be for endometrial cancer but the doctor performing it couldn't get to the endo tissue so was only able to get cervial tissue, which showed squamous cell cancer.  The mass in her uterus is actually a mass coming from the cervix into the uterus...I'm still trying to wrap my head around the new informtion.  They have staged her at 1b2, and she is going for a PET scan next week, and will start 25 rounds of radiation and 5 rounds of chemo over the next 5 weeks, but the doctor said she doesn't see a need for surgery right now.  So now I guess we wait for the PET scan!  She had a CT scan done aleady, and the gyn/onc said she didn't see any signs of cancer anywhere else, but the PET scan will check her lymph nodes as well as give them a more accurate picture of the mass.  She said the PET scan was pretty routine for her patients, but I am so worried about the lymph nodes, I am praying they are clear!  The doctor didn't say too much about what would happen if there is lymph node involvement, and that scares me.  Can anyone fill me in on that???

Treatments can do amazing things nowadays

I am a survivor since 2010 of very advanced stage 3C uterine cancer, which spread to ovaries and aorta lymph nodes. I also had a large number of big fibroids along for the ride.  I had surgery, chemo, radiation and them more chemo. PET scans and CTs are all normal tools of this process. PET scans will light up whereever there is cancer in the body. PET Scans and CT's are all normal tests/tools for the process.

In my case I had surgery first, then rounds of chemo, then raditation, then more rounds of chemo.

Best wishes and healing to your mom. Remember to have faith and positive thoughts for healing.

 

 

 

Rosestar570

Everyone's Journey is Different

I think people hear the word "cancer" and just assume the worst. The fact is that everyone faces a different journey. If the only example your mother has of someone with cancer is from decades ago, or that they had a miserable time....she may just need to be introduced to people who are surviving cancer. If your treatment center doesn't have support groups, you might check out a local Gilda's club or even a local Relay For Life committee. Interman's Angels can hook her up with someone who had a similar cancer to talk to. Livestrong had some great resources as well. The biggest thing is to focus on the positive. I have a blog where you can read about my journey, there are several others like it. http://rebelcupcake.wordpress.com Reaching out to others is a great source of support during what can be a scary time. Hang in there. It isn't all bad.